Are You Tired Of Canceling Plans When You Don’t Feel Well?  Every Crisis Is An Opportunity

Are You Tired Of Canceling Plans When You Don’t Feel Well? Every Crisis Is An Opportunity

“I always say don’t make plans, make options.” ~Jennifer Aniston

It happened again.  Another big “it” for me. One of the (many) reasons I hate about Multiple Sclerosis.

I had to change plans at the last minute.

I was forced to cancel airline tickets, explain for the millionth time in my MS life why I couldn’t attend an event, and disappoint a friend.

It was something I was looking forward to.  Doing something for the greater good.  And afterward I’d have dinner with an old friend.

But once again MS knocked on my door.  Loudly.

I had a difficult week, and I think my MS responded to the stress by giving me a hard time.

I felt ill the night before my trip, and when my body continued to give me problems at 5AM, I knew I better start texting, emailing and canceling my trip.

I wish I had a quarter for every time I had to cancel something because of MS.  Over the years there’ve been dates, parties, concerts, business trips, and even a vacation.

I’d be rich from all of the quarters I’d save up.

Should we stop making plans to avoid having to cancel them if we don’t feel well?

NO.

MS does not define what or who we are.  It is a small part of the total sum of who we are.  And we cannot allow it to swallow us up and spit us out like the pit of a peach.

Of course, it’s human nature to feel badly about having to cancel things, to change them because we don’t feel well.  It wouldn’t be “normal” if we felt nothing at all.  But should those feelings stop us from living the best life we can?

I believe we are more resilient than we think we are.  And I absolutely refuse to give my MS the satisfaction of defining who I am, and stopping me from having the best life possible.

 “A woman is like a tea bag.  You can’t tell how strong she is until you put her in hot water.” ~Eleanor Roosevelt

Over the years, I’ve had friends that backed away from me after mentioning the word “disabled” in describing MS and how it affects me.  Have you experienced that?

They certainly showed their true colors at that pivotal point in time.  And when they did that, I eventually realized that in the end I was better off without them.

Over the years I’ve changed plans with a few couples because my MS was acting up. Some never attempted to make plans with us again.  Have you experienced that?

I felt sorry for their children, because it’s an ignorant parent who cannot understand the fragility of a human being, and the realities of disability. I hope they lose their ignorance for the sake of their children.

“False friends are like our shadow, keeping close to us while we walk in the sunshine, but leaving us the instant we cross into the shade.” Christian Nestell 

I’ve backed away from making large dinner parties for family and friends.  I used to enjoy inviting people to my home, particularly when my son was young.  But in recent years, fatigue and numbness have disagreed with my opinion of making these parties, so that chapter of my life is now closed.  Have you experienced that?

Other members of my family continue to provide our family get-togethers, and I bring whatever I can to add to it.  Wine, fruit salad or a dessert.  That’s my way of helping out while letting them know how thankful I am for the blessing of having their help and understanding.

Life is all about using options at our disposal, or creating new ones.  These new choices can provide a different, and better, way of living our lives.

As the Buddhist quote says:

“Every crisis is an opportunity.”

I hope we can all turn our MS crises into the kind of opportunities that will enhance and enrich our lives.  And bring us inner peace.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (33)
  • cw
    4 years ago

    I see this is an older article. But it is still very relevant and so true. I was diagnosed in 1990 but had symptoms since 1979. I’m always disappointed when MS gets in the way especially when I want to watch my grandson and I’m unable to. 🙁 So I don’t make too many social plans but I do volunteer when and where I can. Volunteering makes me feel okay about myself and that, at times, I can still be a helpful person. It’s very uplifting to me to be able to help someone else.

  • Cathy Chester moderator author
    4 years ago

    You are so right, CW. Volunteering helps us get outside of ourselves by not always thinking about MS and our issues. I completely agree with you. Good for you for doing this in whatever way you can.

    I wish you the best~
    Cathy

  • Cas
    5 years ago

    I am so tired of being depressed. I am taking meds, Abilify and Pristiq, plus meds for ms now Dr wants me to make an apt with a psych Dr so he can change my meds. Anyone else have problems with depression? I much prefer to be alone than deal with people. I just volunteered to work on a goat farm to be busy with goats rather than friends !!!!!!!!!!!

  • Cathy Chester moderator author
    5 years ago

    It is important to get the right medication for your depression. Speaking with a qualified therapist can be helpful. I’ve done so and it’s made a world of difference, as have many other people with MS. If you get the right meds to help with your depression, you will may notice that you don’t mind being with people as much as you used to. A black cloud might be lifted for you. Give it a try. What do you have to lose?

    Please keep us posted, Cas.

  • Jerry
    5 years ago

    I was just about to have a pity party when I read this and was able to see that canceling plans seems to run in “our family.” Fatigue has been plaguing me for weeks and when it hangs on that long, I admit that it plays with my mind. It is true that I am my own worst enemy and the inner diaglogue begins. I think of the cancellations and, as a matter of fact, just this morning had to reschedule an appointment because I am too tired to go. I have felt so alone and even though I know that others with MS experience fatigue and its consequences, it made a huge impact on my attitude today. I must have needed to read this at this moment, because I can truthfully say that the guilt is gone. The empathy that we have with one another, even as strangers, gives strength to me–just at this particular moment in time when needed most. Thanks to all of you.

  • Cathy Chester moderator author
    5 years ago

    I am so glad my writing has been of some help to you, Jerry. Reaching out is key for all of us. Whether it’s here on this site, in an MS support group, or seeking help from a qualified therapist. Talking things out is crucial to help with our sanity! I am so glad you happened to read my post, and I hope you continue to read more of what we offer and leave your thoughts with us.

    We are here for you always~
    Cathy

  • Curious1
    5 years ago

    I have had to cancel the last 6 events I had planned due to severe vertigo and it’s really pissing me off!! I’m also upset that my MS has gotten worse than I decided it would be years ago. I’m going to PT today (finally) to get help, the vertigo usually comes & goes multiple times daily but it’s been constant for 3 days now. I’ve had enough!!

  • Cathy Chester moderator author
    5 years ago

    We hear you, Curious1. It might not help, but we’ve all been there. Yuck!

    Are you taking anything for the vertigo, either by prescription or anything alternative? Perhaps you should try something new if you are taking something and it’s not working. Dig until you find something that works.
    And, of course, please keep us posted.

  • lhalvor
    5 years ago

    It’s my family that doesn’t recognize this and it makes me angry/sad. At 61 with 40 years of this illness, I no longer explain and folks are mad at me. However, bathroom issues are huge!

    MandyRose, I will try your suggestion next time. Thanks.

  • Cathy Chester moderator author
    5 years ago

    lhalvor, I am sorry your family is an issue for you. I wish you could educate them so they can understand what you need, and what you are going through. I am glad you are going to follow MandyRose’s advice. That’s the marvelous part of having these replies on the blogs. Community; banding together to help one another.

    I wish you good luck and better tomorrows.
    Cathy

  • Maris
    5 years ago

    Joybo,
    Your early fade-out time sounds all too familiar to me :-/. We finish dinner around 6 p.m., clean up the table and kitchen, and make it as far as the couch and tv. My DH has always been the one to “pass out” first – “born tired and lives to sleep” :-o! I was the one to want to keep going until the wee hours. NO MORE! Now it’s a contest to see who nods out first – lol? We’re quite the matching pair.

    As far as social life, we’ve go each other and our daughters and their families and a few good friends of many years who know the score and are sensitive and flexible to my needs and his quirks so things work out. Otherwise, we’re homebodies together and fulfill social needs according to my situation without feeling guilty when we can’t bend ourselves to others’ schedules.

    Enjoy life and live it to the fullest within your balance ;-)!

    Maris

  • Cathy Chester moderator author
    5 years ago

    Great advice for everyone, Maria. Live life to the fullest within our balance. Excellent.

    Thank you for sharing your thoughts with us!

    Happy Holidays~
    Cathy

  • June White
    5 years ago

    I have had to cancel so many times due to MS flare-ups that I can’t count them all. Some of my family and friends have been very understanding of my situation and others not so much. As for them, I just don’t make plans with them anymore because I feel my health is more important than making them feel bad or making me feel bad for canceling.
    Sometimes these flare-ups sneak up on us and other times we can tell they are slowly coming on. I would rather miss the time with friends and family rather than go and feel so bad that I can’t join in the festivities with everyone and make them feel bad too.
    My family usually makes it easier on me by doing almost all of the cooking and letting me provide at least one dish so I can feel part of the celebration. Before the days of my MS, I always cooked everything and my family just showed up. But, now it has done a complete turn around. I don’t feel left out I feel loved, knowing how much they care!
    God bless all of you this holiday season and may God bless all those that love and care for you!
    Sincerely,
    June

  • lynn
    5 years ago

    What a help it is to see so many people with the same situations I have. The friends are gone family stays away now but I can come here and see I’m not the only one. Thanks to all of you for posting.

  • Cathy Chester moderator author
    5 years ago

    I am glad you have put your health as your priority. We all know that those who truly love and care about us will understand.

    Thanks for sharing a part of yourself with us.

    Happy and Healthy Holidays to you~
    Cathy

  • maggie
    5 years ago

    This is the second time I’ve read one of the excerpts from the MS blog and I can relate to most everything I’ve read…the only thing is I don’t have MS but I do have Fibromyalgia and I’ve had 3 back surgeries for spinal stenosis that has left me with pain and I’m unable to walk very far and when I do walk I wobble from side to side which takes all my strength to go less than a block…so now I avoid going places…I have missed more get togethers than I can count…I hate to shop but when I do go out and do some shopping because I can’t stand not getting something I really want I am exhausted in a couple of hours…my gentleman friend that I live with is really good about getting me things that he can shop for, he does most of the grocery shopping, picking up prescriptions and other errands and after 4 years together we get along nicely…we both lost our spouses to cancer and don’t want to be alone…when the spring comes he will be doing trapshooting, which he enjoys very much, but I don’t go with him anymore like I did when we were first together…he is very competitive and needs to concentrate when he’s competing so he doesn’t mind my staying home and he has all the trapshooting buddies to get together with…I am an artist and I do crafts along with research for myself and some others on Ancestry.com and that keeps me very busy at home…I relate to what you all are saying on your blog and I haven’t found that in the Fibromyalgia community…it was originally thought that I had MS back in 1986 and the one physician that thought I did have it said that he felt I would become disabled more as I aged but he felt I would be able to get by without an official diagnosis…most doctors I’ve seen don’t want to diagnosis MS because it has a negative affect on so many things like medical insurance and working so they told me it’s better not to know…even with the Fibro I could only find one rhuemotologist that would see me because she is the expert in this part of the country and deals with it all the time where the other doctors didn’t want anything to do with a Fibro patient…I worked for 6 years at a VA hospital and they knew about my Fibro, which includes fatigue, irritable bowel, memory loss and other problems but when I began to have more difficulties the management forced me out of my job and my co-workers were always complaining about me and about my work which was stress that only further aggrevated my symptoms and I was fortunate that I finally received disability from the VA so I didn’t have to leave with nothing unfortunately after 2 years I had only SS a small gov’t pension and a small pension from my late husband’s work…I’m fortunate that my gentleman friend and I can share expenses and can take care of each other…he recently was diagnosed with lung cancer, received treatment and right now the cancer has scared over but he goes in every 3 months for a CT scan to see if it is coming back…when he and I met, we met on a dating site, I was completely bald after treatment for breast cancer…I find that few people understand a disability they can not see…I have had people say, well everyone gets tired, but the fatigue for me is not just tired it’s exhaustion…it’s like the glass is just so full and when it’s gone it’s completely gone…if I do too much when I have a good day or two I pay for it with several days of pain and I’m unable to function well at all…I hope you don’t mind my expressing my feelings on your blog but sometimes I feel like I need to talk with people who know what it’s like to not be understood, to be looked at like I’m faking my disability or that I’m just plain lazy…oh how I would love to be back working at the VA helping veterans with their claims…my youngest son is a 100% disabled veteran who served in Iraq during Desert Storm and I know how difficult it is for veteran’s with disabilities to get help thru the VA, infact it’s just plain shameful…thanks so much for listening…Maggie

  • lynn
    5 years ago

    I do understand completely.

  • Cathy Chester moderator author
    5 years ago

    I think you should reach out for support from The National Multiple Sclerosis Society http://www.nmss.org and ask for a local support group. There you can be with others who have MS. National also has MS/Friends, a 24/7 hour hotline manned by trained volunteers who have MS. They are always read to speak confidentially with you about anything related to MS.

    Best of luck to you, Maggie~
    Cathy

  • Katfish
    5 years ago

    This has become a HUGE problem for me. I’ve basically become a recluse and only have a couple of friends left..not so much because of them rejecting me, but because I’ve pulled back and no longer even make plans. Its just too depressing for me to keep feeling let dwn by myself. My husband on the other hand IS the one person who seems to be taking my inability to “go and do” the worst..and it is slowly killing our relationship. He no longer even asks me to do things with him, and is basically living a life completely seperate from me. I can attend, for example a football game, until about half time. At that point my body is “done” and I need to leave. Hubby just gets irritated and angry that we have to leave, and I feel bad that I’m ruining his fun. I’ve been diagnosed since 2005. Instead of him becoming more understanding of my progression, he is slowly getting less tolerant of me holding him back from things he wants to do. Most days I’m home alone with my dog, while hubby goes on with his life as if I’m not even here. *sigh*

  • lynn
    5 years ago

    Most of your comment also happens to me,lonely it’s awful.I had planned to write novels and screenplays I bought all the materials I needed then 6 sudden serious neck and back surgeries caused a 5 year relapse. Now I don’t have the energy or remember the proper way to write and punctuate properly.I even got the dragon computer set up where you can just speak and it types for you. Now I can’t sit long enough in the chair.

  • Karen
    5 years ago

    I have similar symptoms. I call my neurologist weekly since beginning Tecfideralive. I have had menopause symptoms, chronic diarrhea, nausea, vomiting, I was told to stop taking it. I guess Copaxone is entering my life again:—(

  • Cathy Chester moderator author
    5 years ago

    That’s a great deal, Joybo!

  • Joybo
    5 years ago

    Katfish: I respond largely because I’m AFRAID I will mimic the situation you describe: Become a “recluse,” quit going out, etc. I used to make plans with good intentions and then mostly have to cancel– sometimes I still do that. But more and more I simply respond with “regrets.” “What’s the use?” I think–“I’m just going to be too exhausted, or not be able to keep up in [whatever social situation]. So I skip it and stay home with the dogs. I am single (divorced x2) so at least I don’t feel badly about “holding anyone back…” but my OWN quality of life– and yours– will suffer if we give in to this type of behavior. If we do this. MS WILL *WIN!* I have had this MonSter for 30 years; I’m probably older than you; my body “gives out” by the time most people are sitting down to dinner. No joke; I’m BEAT by 6 or 7 PM!
    So I’ll make you a deal: I’m going to FORCE MYSELF to attend a social event that I have already declined. It’s at a neighbor’s house where there are no “strangers” and where most guests know that “Joy has health problems.” Of course I will have to plan 2 days ahead just to get there: Rest up, adjust meds to keep me AWAKE for the dinner, put on some “real clothes” and look presentable. If I “hit the wall” in the middle of the meal I will excuse myself and go home, period.
    Why don’t YOU call one of YOUR friends, make an early, easy lunch date or invite them over. Ask them to BRING lunch; take-out or anything. And you won’t have to travel. Download a movie or just visit, and force yourself NOT to be isolated. Go shopping ONLINE together!

    I myself am on the border of a typical ‘down’ time of year– I have SAD and hate the winter, holidays, etc. That being said, I need to FORCE MYSELF to stay upbeat, and maybe even call my doc for a change or increase in meds. I suggest you do the same.
    I adore my dogs and they keep me busy and exercised each day. But we all need PEOPLE around us and lonliness will not help you feel any better. Please be good to you!
    GET OUT THERE GIRL, and I’ll promise to do the same. Deal?
    Joy

  • sharon
    5 years ago

    This is part of my life and helps you know who your real friends are. I ALWAYS get trip insurance and the only compnay thta wll cover you with a pre exisiting condition is American Express. They have refunded me at least 4 times. Used to totally freak me out thinking about the $ potentilaly down the drain.

  • Cathy Chester moderator author
    5 years ago

    That’s good to know about American Express, so thanks for sharing the bit of information with us, Sharon.

    Yes, it’s a part of life to learn who your true friends are. It’s smart that you get trip insurance, and congrats on receiving your well-deserved refunds,

    Thanks for sharing your thoughts~
    Cathy

  • Neva
    5 years ago

    Even though I know my friends understand, I always feel guilty about not being able to invite them over very often. My husband and I used to go out once a month with at least two other couples, but then I found that going out was just too much for me to do. So then we started inviting them over to the house to have pizza or something else simple, but now even that is too much for me.

    I keep telling my husband to go out without me, but he won’t do it. We also have been married for 25 years!

    Namaste,
    Neva

  • Cathy Chester moderator author
    5 years ago

    I think you are smart by listening to your body and acting accordingly, Neva. Your true friends will understand. Having them over for pizza is fun and a great way to keep on socializing while taking care of your MS!

    Happy Anniversary to you!

    Thanks for sharing your thoughts,
    Cathy

  • Mary
    5 years ago

    Cathy, thank you for writing this. Yes, in the last 2 years, I have canceled plans at the last minute more times than I can remember. And yes, it is frustrating, but the health of my body has to take priority and my TRUE AND REAL friends will understand this and be there for me. Missing a few dinners with them is painful because I cherish my friends and like to live every moment I can with them, but accepting that I have some limitations at times is easier than fighting it. What you resist persists. Thanks for sharing what we all have gone through with this illness. Hard to make plans when you never know how you’re going to feel each and every day, but I don’t let it stop me from doing so and if I have to cancel, I cancel. I think the people that feel that I’m using my illness as an excuse are the ones I don’t hear from again, and they are the ones who definitely do not understand. That is their choice, and while it’s sad, I focus on the friends that stand by me through the good and the bad, same as a marriage. 🙂

  • Cathy Chester moderator author
    5 years ago

    I agree with you 1000%! It’s hard, though, to not feel hurt (for me) to know those friends were really never your friends at all. But, in the end, we are far better off with our true friends. You are right; they are the ones who will understand because they truly care about our well being. And,yes, the same as marriage. This month is my 25th wedding anniversary!

    Thanks for sharing your thoughts, Mary.

    Best to you always~
    Cathy

  • Mandyrose
    5 years ago

    I solved this in a fairly simple way. When making plans, vacation or dinner, I call the other person. The question I ask is, “If I say I’ll be there, but my illness says otherwise, ON THAT DAY, will you be upset( angry)…. If the answer is: “No, of course not”, I go ahead and accept the invitation. If there is any hesitation, I don’t make plans with that individual. I’ve been nauseated, dizzy and generally ill on the morning of a scheduled vacation, only to be more stressed because a grown person will be “disappointed”. Take care of yourself, my friends.

  • Cathy Chester moderator author
    5 years ago

    I am proud of how you take care of yourself, and the positive attitude you have about it, Mandyrose. Thanks so much for sharing your private thoughts with us. It means a great deal to us…and to me!

    Best always~
    Cathy

  • Cathy Chester moderator author
    5 years ago

    Lois,

    Thank you for that unbelievably lovely comment. I love my friends and I generally believe people are good and compassionate, but there are ones I’ve met in my life who have been unkind to me through no fault of my own. But every experience teaches me a lesson. My lesson right now? That I am glad the day I met you and we became instant friends. I love you for what you said, and I sincerely thank you.

    Big hugs,
    Cathy

  • Lois Alter Mark
    5 years ago

    I find it shocking that people can’t understand that sometimes you just don’t feel well enough to go through with plans, and I’m sorry you’ve had to experience their selfishness. It’s their loss. You know you have lots of friends in your life — including me! — who love you and will be happy to take you whenever you’re available and up for it. I will make plans with you any time, and if you have to cancel, we will just reschedule! xo

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